Key points
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Orphan diseases are those that are not widely researched: they need not be rare. Likewise, not all rare diseases are orphans.
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Rare lung diseases may involve the lung only or multiple organs.
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Patients’ associations are often a lifeline for people with rare lung diseases, providing a sense of community and advocating for better treatment.
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Governments have provided incentives for pharmaceutical companies to develop treatments for rare and orphan diseases; however, drug prices are often high.
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Doctors lack experience of many rare lung diseases, but all respiratory physicians should ensure they have some clinical and scientific knowledge of the field and are open-minded about diagnosis.
See the entire Rare and orphan lung diseases Chapter